DSM 5, the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders – often referred to as the ‘psychiatric bible’ – has now been released in the wake of huge controversy and debate. The alternative classification system, ICD, is based on exactly the same principles. Some of the world’s most eminent psychiatrists have spoken out about the current system.

The former director of the US’s largest funding body for mental health research, the NIMH, recently described DSM as ‘totally wrong, an absolute nightmare’. The chair of the DSM 5 committee admitted that ‘We have been telling patients for several decades’ that the biological causes of distress are about to be discovered, but ‘We’re still waiting.’ Another senior psychiatrist said, ‘Patients deserve better.’ In the UK, clinical psychologists have challenged the use of diagnosis and the ‘illness’ model.

The Hearing Voices Network, alongside many of our professional allies in psychology and psychiatry, has serious concerns about the way we currently understand, categorise and respond to mental distress . We also recognise the confusion that can be caused when accepted facts, often presented to service users as truths, are challenged.

We believe that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system. People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This statement outlines the main issues, as we see them, and invites people on the receiving end of a diagnosis to have a voice in this debate.

Main Issues

Psychiatric diagnoses are scientifically unsound:

No objective tests: Unlike most fields of medicine, psychiatric diagnoses are not provided on the basis of objective tests or measures.

They’re artificial: There is strong evidence that diagnoses do not represent meaningful clusters of problems or link to known biological abnormalities. Diagnoses are voted into existence by committee, representing opinion rather than scientific fact.

Drug company involvement: There is growing concern that new diagnoses are both suggested and shaped by (initiated by) drug company funded research and interests.

Unreliable: The diagnosis you receive from a psychiatrist is based on their opinion about what you have told them. Different psychiatrists often have different opinions about the same person, leading to multiple diagnoses. Two people with the same diagnosis may have nothing in common.

Limited explanation: Whilst diagnosis seems to provide an explanation for people’s problems, this isn’t the case. People are told they have ‘schizophrenia’ on the basis of their unusual thoughts, experiences, feelings & behaviour. If they then ask why they are having these unusual experiences, they are told it is because they have ‘schizophrenia’. This circular argument explains nothing.

Limited use: The issues raised above mean that diagnoses are a flawed basis for deciding on treatment, predicting outcomes and carrying out research.

Missed opportunity: Psychiatric diagnoses can stop people addressing the links between social and economic policy and mental distress. Essential funds are used in the ongoing futile search for genetic markers instead of addressing the societal issues we know lead to mental health problems.

Disempowers: Psychiatric diagnosis ignores people’s own explanations for their distress and encourages them to defer to an ‘expert’ for treatment. Having your reality redefined in terms of illness and biology is an incredibly powerful experience that can set the scene for a lifelong psychiatric career.

Medication-focused: In diagnoses such as ‘schizophrenia’ treatment is primarily medication, which is becoming increasingly criticised for its harmful effects and lack of efficacy. Medication does nothing to address underlying difficulties.

Human rights: People are expected to accept diagnoses for fear of being labelled as ‘lacking in insight’ and having treatment forced on them, violating their basic human rights. Others may, understandably, hide their voices or visions to escape forced treatment – blocking them from receiving help to cope with their experiences.

Takes away hope: Diagnoses such as schizophrenia and personality disorder, seen as a life-long condition, can unnecessarily take away people’s hope for a meaningful recovery.

Discrimination: People diagnosed with ‘severe and enduring mental illnesses’ are often subject to stigma, discrimination and exclusion. They may have trouble getting insurance, security clearance to travel overseas, and difficulty fostering or adopting children.

A Way Forward

Finding the best way to support those of us who are suffering and struggling to cope without relying on diagnoses and the existing system is a challenge. It can be hard to see what is possible when all we have known is what is available. Still, we want to engage people with lived experience of diagnosis and our allies, in a discussion to create a way forwards.

Our initial ideas include:

Seeing mental distress as human and, ultimately, understandable: Rather than seeing voices, visions and extreme states as symptoms of an underlying illness, we believe it is helpful to view them as meaningful experiences – even if we don’t yet know what that meaning is. We believe it’s important to use human language when describing human experiences rather than medical terminology. Given the role of trauma and adversity, we need to start asking ‘what has happened to you?’ rather than ‘what is wrong with you?’

Keeping the person in the driving seat: We want people to have the freedom to define their own experience. Support should be based on need, not diagnosis. Equally, people need to access a wide range of alternatives to understand and manage their experiences. Medication is just one way, amongst many, that people may choose. We need information about the pros/cons of each approach – true choice and collaboration, no coercion.

Supportive communities: Mental distress is not just the domain of mental health services. Communities have an important role to play in supporting those who are struggling to cope. Community based options can run alongside, and as alternative to, psychiatry. Equally, these approaches must go hand in hand with greater awareness of the causal impact of social factors such as poverty, gender and racial inequalities, unemployment, deprivation and abuse, on mental distress

Invitation to Debate

We want to know what you think. So, what has your experience been of receiving a diagnosis? What has your experience been of alternatives to traditional services, like peer support? What aspects of professional care have been helpful? Whilst we’re hosting this debate on our website, we want you to talk about it in your Hearing Voices Groups and down the pub. Get a conversation going and tell us about it on here. This is not just an academic or professional issue – it’s one that affects our lives.

34 responses to “Position Statement on DSM 5 & Psychiatric Diagnosis”

Thank you Joanna for referring me to this page.
And thank you to the people who are involved with this.
I’ve always felt a rather undefined “I’m more than a bit nuts” and never sought professional help in case it was true and I was then labelled “a crazy person.” The thought of other people knowing, judging, condemning, was not something I was prepared to risk.

Had what’s sought here been the prevailing impression at the time I’d have had no fear. Now, happily, I’m used to me. Actually ‘happy’ with me and feel no need. I think that makes me lucky. I hope you get to help an awful lot of “me’s” who then need not wait till old age to feel “I’m okay.” And that they never know it was once not so.
And that’s good.

Hi Catz, Thanks for sharing that. It is worrying that many people still avoid asking for help because they fear the consequences. It’s fantastic to hear you now are happy where you’re at, but do you have any thoughts about what response would have been helpful back when you needed it?

It’s precisely because doctors have been listening to even the most extreme of the self-centered nutcases that we’re having so many problems with treatment protocols. Listening to the patient doesn’t mean that the doctor should automatically accept the patient’s diagnosis — as if every patient is free from vested self-interest.

That’s an interesting perspective. First and foremost, lets keep this discussion respectful. Offensive terms such as ‘nutcases’ aren’t helpful here. That said, it sounds like you feel the person with the diagnosis (the patient) is to blame for the system being ineffective because doctors are listening to what they think their diagnosis is. Our experience is very much the opposite of that – most people we meet have had a diagnosis given to them by a doctor, whether or not they find it helpful. The points above relate to the diagnoses themselves being unscientific and ultimately unhelpful, and this is why we’d think treatment protocols are a problem. They’re based on a flawed system. In the situation you describe, the patient is in the driving seat and the doctor is powerless to do anything but accept their perspective. This is the exact opposite of some of the experiences we hear about in groups (though I want to say that there are many good doctors our there who did work alongside their clients rather than ‘on’ them).

I mean, that if we were to use the patient’s definition for what constitutes “proper” treatment, some of them would claim that five star hotel accommodations and daily massages are “necessary”. There comes a point where a reasonable person is not a reasonable patient.

Over £20,000 was spent on the medication I was prescribed to help deal with my voices/visions/beliefs. If I had been given alternatives from the start, and supported to make sense of my voices, it would have saved the NHS a bundle. The problem was i was turned away from therapy because of my ‘psychosis’. I don’t want 5 star hotels & massages, but I do want support that is based on my needs not my diagnosis. I want the opportunity to speak about my experiences with someone who listens to them. I want to be seen as a person, not a label. Is that too much to ask?

What is being suggested here is not that mental health professionals do away with the knowledge they have of appropriate and effective ways of dealing with difficulties, but that they listen more to the knowledge the client has of themself, their particular situation and what has worked and not worked for them in the past.
This involves both individuals working together to decide on the most appropriate and effective way of dealing with any difficulties that are arising, as well as the nature of those difficulties themselves.
There is no suggestion at all that ‘luxury’ would be doled out for free in the name of treatment. I realise your comments are not informed by knowledge of psychological difficulties, the mental health system or the work of mental health professionals, and that internet posts are seldom the place for well-informed debate, but remember that issues that affect people’s lives in such a profound way deserve considered and informed comment rather than insults and hyperbole.
Well done HVN on drawing attention to the issues in straightforward language. This debate needs to be heard by laypeople and professionals alike.

If by 5 star you mean a single room and clean toilet and shower facilities I don’t think that’s an unreasonable desire given some inpatient units can be a bit grim environmentally. Ok it’s the NHS, no one can expect luxury but I’ve seen filthy bathing areas and where it’s feasible single rooms can make it more bearable for some people.
Access to non-medical asylum would be a great alternative, user-led but not excluding professionals and just ordinary houses.
As for massage, the Red Cross used to offer a ‘therapeutic care’ service in care homes and hospitals where they offered neck & shoulder and hand massage which sick, old and vulnerable people found really calming, bit like the therapeutic dogs and cats which are also used.
If there are volunteers willing to offer it and people would like it, can’t hurt.

You are perhaps a devil’s advocate stooge Nurse ‘Killjoy’ but your expressed cynincism is unfortunately quite common especially in the mental health system where the notion of recovery is treated as some New Age fad that will pss in time. This debate has been growing for some time in intensity. One fire retardent has been the reluctance of NGO’s to challenge the diagnoses/medication approach because of fear of compromising their funding. The debate has now erupted with the position statement from the HVN and I applaud them for it. It has been too long in coming but now it’s out there we can get on with a general refocus towards psycho social help for those previously saddled with those rather dubious diagnoses.

I realize that this is quite an old comment. I am wondering Nurse Killjoy, If you have given thought to the idea that sometimes we need something equally good to counter balance the bad. That this may balance us inside.

For myself combating a life of trauma, I often feel I need to balance my wrecked soul/mind with the strong peacefulness of something like a monastery so I can safely begin processing and gaining power over what plagues me. To do this in an ordinary environment full of triggers (pretty much everywhere) has proven to not be a good idea at all and tends to make things worse. I won’t go into how horrific and further traumatizing it is to be sent to an institution.

I welcome the HVN statement and will promote discussion and reflection of it within my networks. In particular it is heartening to see the discussion move back to people with lived experience and beyond the recent the media view of a battle between psychiatry and psychology which it is not. Many of my psychiatric and psychology and nursing and service user colleagues recognise the limitations of the diagnosis and share a desire for a more narrative based approach whereby the person is in control of creating and living their own life story – as we all desire and attempt to do.

Someone in my family received a diagnosis of mild depression – got better without any drugs as refused them – took around 6 months and then went back to work.

1 daughter given the drugs as a child – Rispiridal and then diagnosed with Schizophrenia – now on top of the world and graduated from University/working.

Elder daughter currently sectioned with about 5 diagnoses – latest chronic treatment resistant been put on a shocking total of around 14 mind altering drugs. labelled with Aspergers and Schizophrenia as well. Now on Clozapine and being given Metformine off label at 500mg. Just received private reports and having them analysed by experts – not looking good. Initially took herself off Cipralix 30mg in one go which probably led to the psychosis and then one label after another combind with drug after drug given. Father age 90 given Rispiridal and Seroquel for Alzheimers – suffered a heart attack. Had the tests done at Bio Lab and have sent them to Dr Walsh of the Walsh Institute. I fear for my daughter’s life right now.

All “mental health experiences” are, in my opinion, and personal and professional experience, a result of traumatic experience/s and a biological sensitivity. When we begin to address people instead of diagnosis and when we recognize the value of a holistic approach we will begin to be more respectful and more responsive and more successful in assisting people. One of the most profound moves would be to include therapy/counselling under OHIP and make it accessible to everyone.

Fantastic statement – great you are bringing a service user voice to the debate as well as a light to show that “facts” and “professional expertise” hide a multitude of sins. As a professional we need to show far more modesty, and stop pretending that what we have to offer is with-out fault. We need to listen far more to the stories of service users and start seeing the person rather than objectifying them as a “disorder”. Service responses too often based on fear and rigid beliefs – we need to seriously look at ourselves before we can claim the ability to help others. Keep up the good work.

It’s heartening to see some of the stuff I’ve been thinking for years put so clearly here. I’ve had various mental health diagnoses over the last 13 years, and been receiving the kind of treatment you’re critiquing here over that time. What you’re saying rings true – there’s not much space within this model for understanding my problems in human terms, or for me to explore for myself how to make my life liveable again.

I’d happily see the DSM burn in hell and for everyone to use their own descriptions but you’re overlooking something fundamental – so many things in western societies require “mental illness” to be a medical condition – the law (including disability and criminal law], every single financial and administrative system requires it and mental health services are not going to relinquish care clusters that easily. You can’t even access support from services without a diagnosis. There’s also the problem of how do people access social care of their own description [which is as non-medical as it gets] but which requires a diagnosis, also benefits, assistance with housing etc. The vile fact is diagnosis is now needed more than ever in order for people to hold onto the support which gives them the very ability to live, like it or loathe it that’s how it is, so how are we going to reconcile this?

Can we just have an acknowledgement of these issues because diagnosis doesn’t exist as a separate entity from politics and how society views disability and people needing support to live [which is highly conditional and inflexible]. Discussing diagnosis is not a linear discussion, it exists within a context we can’t ignore and need to acknowledge alongside it. Currently there are some mental health professionals who are prepared to use diagnosis to help a person access something but not view them in that way otherwise. Disability Living Allowance for example which does require some declaration of diagnosis as well as needs, can be used in a non-medical way to support living or working.
Getting rid of diagnosis is great but we have to consider how we would ensure governments don’t then opt out of offering support because of lack of a label, so it’s about just saying it out loud.

You make an important point John, that currently, getting assistance is often dependent on having a diagnosis so it is important that debate about diagnosis doesn’t equal ‘everything is fine’, and provoke fear that vital support will be taken away from people in real need. For me, not having a diagnosis does not mean that someone doesn’t need support and a system that wasn’t based on diagnoses would certainly need to adapt to another model in order to properly support those in need. Sadly, having a diagnosis doesn’t seem to have deterred the current government in trying to force vulnerable people to be declared ‘fit for work and I wonder if a narrow focus on biology gives politicians the perfect excuse to do nothing to address the complex social and political issues often underlying many people’s mental health difficulties.

Thank you Jacqui, I think it is important for user groups to be vocal on these issues whilst simultaneously having this much needed discussion about the validity of diagnosis. As you say the system would need to adapt to another model of describing distress and need because diagnosis is like the raspberry ripple of the ice cream of all our administrative and financial systems. Psychosocial distress/disability [insert your preferred terms] is socially defined and psychiatry exists within that and an inflexible political structure which dictates full-time employment preferably with no state/service support as the ideal.
Now that is I’m sure what most people themselves would prefer too, but as you know in reality that isn’t always achievable for many diverse reasons including the impact of voice hearing. What might be helpful is if all user/survivor groups could take the lead and also have position statements on these issues alongside your very fine statement on DSM.
You’re correct that having a diagnosis hasn’t deterred current government [of all parties] in viciously targeting sick/disabled/unemployed people, but mental health service users have been shown to be especially at risk of these policies in terms of benefits to enable living and/or working, housing, and support.
I don’t believe the narrow biological focus of mental distress has especially aided politician’s in pursuing this ideological witch hunt, because it wouldn’t apply to the unemployed or physically sick/disabled – but they do it to all those groups.
They are already aware of the massive social fall out with the rise in evictions and use of food banks so they already know about social issues and their impact no matter how much they deny the suicides and other human costs.
If anything, it could be said that if we don’t raise the issue of how needs must be recognised within the benefits, health & social care systems and housing alongside this debate then people like IDS would happily agree to the justified assertion that there is no such thing as mental distress located within faulty genes/biochemistry/brain structure – and promptly withdraw even more on the basis that a factitious illness does not require state support – do you see what I mean?
So what I’m suggesting is we ask all user/survivor groups to have a position statement on these issues alongside statements regarding diagnosis and for these issues to be referred to jointly given fear of loss of income, housing and support [and the processes by which they happen] is driving some people into the acute end of services where they are more likely to end up heavily medicated. For some, it can even be an even greater fear than being sectioned, and it’s putting people’s recovery back.
It would be good if user/survivor groups could offer suggestions which would enable recovery which the big charities and professional bodies are failing to do such as; additional outcomes other than not working at all or full-time work [can be too great a leap for single people who won’t qualify for Working Tax Credits unless working nearer to full-time hours now and can now be subject to Jobcentre harassment to obtain more hours or risk being sanctioned].
Those additional outcomes could for example include; being able to work part-time hours and not be under pressure to do more [with appropriate evidence], or for chosen voluntary work to be an outcome [in some countries it’s acceptable for people to remain on disability benefits doing regular voluntary work], or a ‘hop-on, hop-off’ system whereby people could work as able and then return to the same level of support without having to go back to the beginning of a very arduous process.
It would be so productive and proactive if all user/survivor groups spoke of this, it would actually help government to grasp some of the social and political causations of distress if we did. We can offer a sound economic argument; support people and they cost less in the long run!

There is also evidence that many patients who are not active
in the service user movement find psychiatric interventions
problematic and sometimes harmful. In their study of users’ views
of services, Rogers et al found that many service users did not
really value the technical expertise of the professionals. Instead,
they were more concerned with the human aspects of their
encounters such as being listened to, taken seriously, and treated
with dignity, kindness and respect.

To quote from Prof. Micheala Amering:-

While the complex, as well as polarized, discussions about recovery are both fruitful and necessary, I would like to suggest that in order to meet the challenges outlined by these debates we might profit from a simple formulation for our efforts. To guarantee the human rights of people who come in contact with psychiatry could be the main focus for all of us in the international mental health community , be it as peers , clinicians, family and friends, advocates, therapists or in our research work as scientists. Such a focus might have far reaching implications.

Id just like say i totally agree with everything in your position statement i hope websites like this 1 will help sway the people who run “of course that means government” Mental Health systems who only offer Toxic Psychiatry..This model of diagnose then medicate is just not working and is doing more harm than good. We need to look at offering people alternatives to drugs and there are many, that includes no treatment at all. In 3rd world countries who have no access to psychiatric drugs there recovery rates are far greater then in our 1st world countries. The most important issue of them all is the need for proper human rights amongst those who have been labeled it would be about time something was done you would think,but im not holding my breath anytime soon…

I’ve suffered from a depressive disorder, and a severe anxiety disorder since I was a young child. Was always left untreated until I crashed under the anxiety and developed severe anorexia that lasted 20 plus years and still torments me today. When I was formally diagnosed with anorexia, the psychs decided to tack on the labels of depressive disorder, anxiety disorder and at least one personality disorder. ( Border-line). I have spent the last 15 years of my life in and out of hospital being re-fed and then losing weight… I’ve trialled countless anti-depressants and was put on a 3 mg dose of Clonazepam, half of which I am still on to this day. During one hospitalization they decided I ought to be on an anti-psychotic (Olanzapine) although I was very reluctant to take it. Pressure. Told I was non-compliant etc. The point is that they treat all eating disorder suffers as a simple list of descriptors and merely treat with drugs and tons of food. Ok, a bit of CBT. For me however, my anorexia was a spiritual crisis that of course was never even acknowledged as a potential reason why the body/self hatred may exist in the first place. Gaining weight did not solve the problem. Nor did/does the countless drugs I am currently taking. Psychiatry failed me. They told me I was palliative, I was going to die, and they dismissed me. I am not dead and am now seeking the help I’ve always actually needed by finding a wonderful spiritual director. My dream is to resolve my spiritual crisis, learn to nourish my body and live the rest of my life drug free.

Good to hear your account, Andi. I am lucky in that the antipsychotic meds do the trick ie they stop the delusions eg that planes are going to crash on me. And I still hear the voices but they are positive and wonderful and have helped me to write 5 published books and gain 5 degrees.

I am fairly new to connecting to this debate. Please excuse any ignorance on my part. I have heard inner voices for most of my life. If I were not taking anti-psychotic medication then at the first hurdle of stress, I would become delusional. On the medication, I can still hear the voices and they can be very helpful and explain the publication of four academic books and one autobiography. When writing all five books, surprisingly, I think I was unclear about the nature of the voices, and not consciously aware that I was responding to an inner voice – perhaps there is a better explanation? Talking therapy together with the book The Voices Within by C.Fernyhough have helped me to identify the existence of my own inner voices. My autobiography does not address my inner voices head-on but gives a factual account of my delusions, which have been almost fully abolished since I have been taking in tablet form the antipsychotics. I wish to turn my hand to fiction and to learn more about my inner voice.

I’ve, as a mental health professional, long abandoned the diagnostic system for treatment, and I’m honest with my patients about this. I tell them why I don’t do diagnosis, and usually, they like what I tell them.
Instead, I listen to what this person needs, (s)he’s currently not getting, and then think of ways, how to meet their needs better.
The only place, where I formulate diagnosis, is so the health insurance pays the treatment. But this diagnosis does not get into the treatment with the patient.

I was brought here by Joanna Moncrieff’s fantastic ‘The Myth of the Chemical Cure’ and I second the statement on this page which rightly observes mental distress should be viewed as “meaningful experiences”

I find this is often understated or misunderstood.

Interestingly, what others saw in me as ‘first-episode-psychosis’ I believe was a very painful but meaningful period of growth which was so elegantly and purposefully staged. Of course, it’s very messy and troublesome to others. At any point should I have submitted to the idea that I was unwell – and no one will debate this as fiercely as the individual in question, so this ‘lack of insight’ business sums up the most unfeeling words anyone can suggest – I think I would have spun back and got caught in a carousel of paranoia or whatever fresh hell I was cycling through i.e. I would have taken longer or suffered more before stabilising. It’s a crash course in philosophy no education can buy and there is much value in that singular thought where you test the walls of your own reality doing curious things. I am better for it.